Autism Speaks: An Interview with an Autism Expert and Autism Web Resources for Parents

In yesterday's feature story (Autism Speaks: An Iowa Family Hopes Others Can Learn from Its Journey) a West Des Moines mother shared her deep feelings of guilt of not recognizing her son's autism sooner.

“We cannot look at home movies because we are afraid of what we’re going to find, things that were blatantly in front of us that we will feel silly for not having seen,” said Jennifer Hahn, whose son, Nicholas, was diagnosed with autism at the age of three.

But it turns out autism can be a very difficult condition to diagnose in children, often requiring a team of specialists to rule out other potential conditions. How can parents, then, be expected to know for sure?

This article is about providing some resources to help prepare parents better for the challenges ahead.

April is National Autism Awareness Month. One in every 88 children have some form of autism, according to a 2012 study done by the Centers for Disease Control and Prevention.

For today's follow up to that story, here is an e-mail interview with Dr. Royann Mraz, a Clinical Associate Professor at the University of Iowa at Co-Medical Director of the University of Iowa Children’s Hospital Autism Center. We will also provide online resources vetted by the children's hospital for parents who would like to read more, as well as some other local media coverage for Autism Awareness Month.

How difficult is it for doctors to diagnose children with autism? What is involved in that process? 

Dr. Mraz: It can be difficult to diagnose autism. Ideally, the child with evaluated by a team, which includes a child psychologist, a child psychiatrist or developmental-behavioral pediatrician, and a speech pathologist. We review the child’s developmental history and symptoms, evaluate learning, speech and language, and observe the child in a structured way. 

You mention it is difficult to make an autism diagnosis. What is it that makes it so difficult and why are so many specialists required?

Dr. Mraz: Children with milder symptoms are sometimes more difficult to diagnose. We want to rule out a hearing problem, speech language or learning problems, or emotional/behavioral problems, such as ADHD or anxiety, as well as other medical diagnoses.

Have there been any recent developments in the definition and understanding of the condition that have made diagnosis more accurate and easier?

Dr. Mraz: There will be new criteria from the American Psychiatric Association for diagnosing Autism Spectrum disorders, which will be published in the next month. Autism, Asperger disorder, and Pervasive developmental disorder, NOS will be considered Autism Spectrum Disorders. We don’t know yet for sure how this will affect diagnosis.

After a diagnosis is made, what steps are taken to help that child and family deal with autism? Does it vary dramatically from child to child and the kind of condition that they have? 

Dr. Mraz: Parents are given information about autism. Social workers and family navigators can help with the initial steps.

Recommendations are individualized. We usually recommend help with communication and socialization. Applied behavioral analysis is a behavioral approach, which has been shown to help. For young children, we usually recommend preschool.

What are signs that parents should look for in their children that would lead them to seek out a diagnosis for autism? 

Dr. Mraz: Speech delay, poor eye contact, difficulty socializing with peers, strong interests or repetitive behaviors, lack or delay in pretend play.

Has there been any progress made recently on what causes autism? Any hope on the horizon in the field as far as education and treatment?

Dr. Mraz: There is strong evidence for a genetic predisposition. In 10-15% of children, we may be able to find a definite cause.

Is there any research being done specifically into autism at the University of Iowa or other research being done either nationally or in the state? 

Dr. Mraz: There is a lot of research being done nationally. Thomas Wassink, MD in Psychiatry is doing genetic research. Scott Lindgren, PhD and Dave Wacker, PhD was doing behavioral intervention with young child with ASD by Telehealth.

Finally, as an expert in the field, what are some common misconceptions about autism that you would like to dispel for the public?  

Dr. Mraz: There is good evidence that vaccinations don’t cause autism.

(Editor's Note: The controversy over the suspected connection between vaccinations and autism is documented in The Panic Virus: A True Story of Medicine, Science, and Fear, by Seth Mnookin.)

Web Resources

Some other recent autism related coverage in Iowa:

Campanile illuminated for autism awareness the Northern Iowan April 18, 2013.

Living with autism Clinton Herald April 8, 2013.

Iowa State hosts autism awareness event Iowa State Daily, April 1, 2013.

UI professors collaborate with Northwestern on autism research The Daily Iowan, April 2, 2013.

Family touched by autism shares hopes on World Autism Awareness Day KWWL, April 2, 2013.

SERVICE DOGS: New Litter To Help Kids With Autism WHO, April 11, 2013.

Online Links Recommended by the University of Iowa Autism Team on its web page.

Encyclopedia articles linked at the team's page:

• Diagnosis and Screening of Autism Spectrum Disorders (ASD)
• Causes and Treatment of Autism Spectrum Disorders (ASD)
• Interventions for Autism Spectrum Disorders (ASD)

Local Resources:

• Disability Resource Library
• Safety Store
• Iowa Autism Society
• Regional Autism Services Program (RASP)
• Family to Family Iowa
• Iowa Compass
• Iowa Area Education Agencies

National Resources:

• American Academy of Pediatrics (AAP) Autism Toolkit
• Centers for Disease Control and Prevention (CDC) Autism Information Center
• Autism Speaks
• National Autism Center
• First Signs
• Autism Internet Modules

Print materials commonly distributed prior to a visit, during a visit, and after a visit to the Autism Center:

• Autism Center Brochure
• What Is an Autism Spectrum Disorder?
• I Think My Child May Have Autism...
• Helpful Resources Before Your Child's Appointment
• What to Expect When you Come to the Autism Center
• What Is an Individual Education Plan (IEP)?